Tag: ibd

Feeling conflicted…

So, I asked my primary care doctor this morning what the actual plan was because it seems to me that my signs of improvement are purely because of the IVsteroids I’m currently on. I know from experience that every time I go onto them, I improve, taper the dose and finish the course, only to relapse and end up back in hospital a month or so later. He said this is possible and that they want to either continue me on the humira or switch me to vedolizumab. But before they can do any of that, they need to get me clear of the c. diff infection.

What I’m conflicted about is every trial I’ve gone on – infliximab, humira – hasn’t really worked and I’ve ended up relapsing. So, do I go with the trials or do I just request the surgical route? I’m really unsure and I’m frightened of what will happen in the next few months; I don’t want to end up in hospital yet again only for surgery to be my only option.

gentle reminder

gentle-reminder:

no matter what you are going through right now, you are strong enough to endure it; there might be a struggle, you might feel alone or like everything isn’t real around you, but please, please do not give up – say it with me ‘i will not give up’: that’s your gentle reminder for yourself, hold onto it, and try your best to never forget it

“I will not give up. I will not give up. I will not give up!”

12:30am

I’m now on the last two hours of my second ten hour saline drip of the day (the first one was overnight last night and ended pretty early). I’m torn between trying to sleep throug it and just staying up because the pump will wake me up either way when it ends. I’m not overly sleepy so maybe I’ll just play some games on my tablet and if I dose off, it doesn’t really matter.

Tuesday update

I’ve just spoken to the doctor again today; my xray came back ok – no toxic megacolon. Also, the surgical team are still going to come talk to me but it won’t be for a day or two, I imagine.

The steroids seem to be working as well (much better than last time) so my inflammatory markers are lower and my appetite is coming back so I’m hopefully putting on a bit more weight. I’m also hoping that this means to c. diff infection is on its way out as my BM have slowed a little since starting the steroids.

So, the doctor has been round. For starters, he wants to start me back on steroids to fight any inflammation in my gut. My stomach is very tender at the moment which has caused him some concern so he wants another xray done. But he’s also mentioned surgery and is going to have a surgical team and a stoma nurse come talk to me. Needless to say, I’m worried and got a bit upset once he’d left. But I know it’ll be for the best in the long term.

I managed a shower but now I’m very low on spoons again. They bought dinner round early so I’ve had most of that. Now, I think I’ll try and sleep for a bit; my left side is hurting again and I feel like I’ve got a football in my stomach so I’m hoping a nap will help things move along so I’m a bit more comfortable tonight.

I hardly slept last night so I’m feeling pretty awful today. I’ve been dosing on and off all morning but I don’t feel any better for it. I’ve barely eaten anything either because my stomach is hurting. I’m hoping a nice warm shower will make me feel better but first I need to gather some spoons from somewhere to get out of bed.